By Mark Brown
Being on a waiting list for treatment for your mental health doesn’t mean that your other problems stop. Mental health difficulty is something that happens in your life not only when you’re using services. What happens when people reach out for advice and support? Often, there’s no one there to answer.
Mental health difficulty is something that often deeply affects the lives of those that experience it. It often isn’t easily compartmentalised or contained. There is a symbiotic relationship between circumstances in your life worsening and the level of difficulty your mental health poses in finding solutions to those difficulties increasing. If we are unlucky enough to be living with the kind of mental health difficulty that does not just go away, the challenges that result from living for years with this reality will spread across many domains of our lives. Treatment may be part of solving these challenges, but what about other more direct problems?
We all like to think we know where to turn in a crisis, but the reality is that we count ourselves lucky to never reach those crises and have our security challenged. I spoke to a number of people who live with the longer-term impacts of mental health difficulty, asking whether they feel there is anyone they could turn to for advice and support. The answer was mostly a resounding ‘no’. Jenny lives in London and experiences mental health difficulties and another chronic health condition. “I really don’t feel like I have anyone I can ask for help with stuff at the moment, practical issues or otherwise,” she told me, “especially because if it is a practical issue totally unrelated to your mental health, mental health stuff complicates it. People don’t appreciate how hard it is to be hunting around for the right service or organisation when you are already in a bad way.”
There is a symbiotic relationship between circumstances in your life worsening and the level of difficulty your mental health poses
We know that having a mental health difficulty makes your life more complicated than it might otherwise have been, and that people with mental health difficulties tend to end up poorer, in worse situations and for longer than those who do not experience the same. We might assume mental health services provide support and advice with the problems of living, but in practice they do not. People may move in and out of treatment but this doesn’t mean that their problems pause until they get to the front end of a waiting list. Arguably the recovery college movement was intended to fill this gap, creating opportunities for those with longer-term mental health needs to gain skills and support around life issues, but doing a course in household budgeting is not the same as getting advice about what to do when your cupboards are bare and you’re on the verge of being evicted due to an increasingly punitive and hostile benefits system. Advice is knowledge you can put into action.
“There have been so many times where it has just felt like there is literally nowhere to go and no way out of a situation,” Jenny says. “There isn’t anywhere to get advice in my experience. Everyone signposts to everyone else, and that means that you just go round and round in circles and don’t get anywhere. In terms of practical advice and information, I’m always told ‘go to Citizens Advice’. I think services who signpost to Citizens Advice don’t actually realise the reality of what they are signposting to.”
In Jenny’s experience, Citizens Advice are often over-subscribed, with people queuing from early morning, and may not have specific mental health related knowledge. She found it particularly difficult finding financial and benefits advice during time signed off sick from work. “If I hadn’t been able to borrow money from my family I’d have been evicted,” she told me. “There are so many times when I’ve felt like it would help my mental health more if I had advice about some of the more practical stuff in my life that is causing me stress especially when waiting lists for clinical help are so long and these practical things could be dealt with in the meantime.”
Doing a course in household budgeting is not the same as getting advice about what to do when your cupboards are bare and you’re on the verge of being evicted
Jenny would like to see a kind of single assessment service, that looked not just at people’s mental health symptoms or diagnosis: “Like a truly holistic assessment service that looks at all aspects of your life, not just the clinical stuff. So I guess what I think is really needed is more holistic services which help people with a range of issues, not just specific things. This would avoid people getting passed around so much too, services wouldn’t be able to say ‘oh we don’t deal with X so you will have to go to Y for help with that’. I often feel like the only place left to turn is Samaritans.”
Helen is 35 and has anorexia, OCD and is also on the autistic spectrum. She told me: “I have a sense that no one really knows how to help. I’d like advice on how I could have a less miserable life; a life which is less dominated by the problems I have.”
She feels that being on the autistic spectrum is an issue “in terms of treatment and in terms of understanding why I’ve developed OCD and anorexia. In terms of talking about ‘recovery’ too – I suspect it means I will always struggle and have to find ways of managing life.” Helen says living with multiple mental health difficulties makes things complicated: “I can’t think that people aren’t aware that some people aren’t helped that much by the ‘go to’ treatments.”
‘It would help my mental health more if I had advice about some of the more practical stuff in my life that is causing me stress especially when waiting lists for clinical help are so long’
Helen agrees that mental health services often feel like a machine that you are either ‘in’ or ‘out’, with little in between. “If you could get access to services which wasn’t premised on particular models of treatment, that would be welcome”, she says. “I’d like people I could reach out to for support more and actually people in professional positions who will admit to not knowing the answer. There are some support organisations locally but fairly low-level intervention which seem more about targeting isolation; preventing people from deteriorating rather than treatment. I know I need help but finding it isn’t easy. Advice on ‘coping with life’ and managing myself would also be good but I don’t know who provides that. I think it is being lucky enough to meet people who can offer insight or perspectives that helps.” As Helen says: “sometimes advice or the knowledge of people who have had similar experiences seems like it would be more helpful.”
Sometimes knowing what to do isn’t the same as being in a position to do it. Information alone isn’t the same as support. Sara has been depressed for 30 years: “This illness robs you of that strength,” she says.
Sara describes herself as “struggling right now.” She told me: “[I] never get long-term help after a crisis. I don’t want to burden my friends and cry in front of them. They don’t know what to do. Belong to online group and should message there but don’t see how that’ll help. Reaching out is so hard. Doctors will just offer an appointment next week and they’ll just offer meds again and I don’t want them anymore.”
Mental health services often feel like a machine that you are either ‘in’ or ‘out’, with little in between
For her, Sara says: “support for living day to day will help prevent crisis. Wellbeing in general needs to be a high priority. Encouragement, regularly, and different ways to gain support, e.g. texts, emails and calls if up to it, should be an option. If you get to trust someone who listens and supports you, it helps you so much.” Sara would love to be offered long-term support that includes psychological help and “not be thrown off the books after a month or two and left to fall again”. She says, “My flat looks like a garage sale and I can’t get round to sorting it. There is no practical help for that kind of thing either. Long-term psychiatric help is what I need and asked specifically for and got given four sessions of counselling that I could barely attend anyway as I was too low.”
Jenny isn’t the only person who mentioned the Samaritans as the only available source of support and advice when all others are exhausted or unavailable. “In the town where I live,” Jane told me, “my only source of mental health advice now is Samaritans. When I was becoming poorly in February, I ended up on the phone to Samaritans for ages; they had to help me come up with a medication plan; I couldn’t decide which of my meds to take or what dose, so they had to help me; and a plan for the evening to keep myself safe. When I was in hospital, I was told I could phone the Samaritans if I needed in future – that was their back-up plan! – and the Home Treatment Team also directed me to the Samaritans as they discharged me after one visit. There is a local Mind, but they run groups for things like helping people with mild-to-moderate conditions build confidence rather than providing mental health advice.”
‘When I was in hospital, I was told I could phone the Samaritans if I needed in future – that was their back-up plan!’
In theory, Crisis Home Treatment Teams are on hand to provide support to people who are considered at risk of being readmitted to hospital for their mental health. Mind defines the roles of these teams as “supporting people who might otherwise need to go to hospital, for example due to psychosis, severe self-harm or suicide attempts. They usually include a number of mental health professionals, such as a psychiatrist, mental health nurses, social workers and support workers… The amount of support they provide can vary, for example, how often they can visit you and whether you can contact them 24 hours a day.” When Jane was recently discharged from hospital, she was told she could only ring the Home Treatment Team in two circumstances: “One: I was struggling to maintain my safety and there were imminent risks of dying or harming myself significantly or; two: if all attempts at trying to manage my distress have failed, including medication.”
In common with many people I have spoken to, Jane found the Home Treatment Team to be less than helpful when it came to wider support: “The Home Treatment Team nurses who came to see me were so judgemental and dismissive, they would not be people I would turn to in crisis.” Staying out of hospital isn’t the sum of the needs that someone might have while living with a more severe mental health difficulty. As Jane says: “The Home Treatment Team came to check on me 48 hours after I was discharged from hospital and within a few minutes of arriving told me I was ‘managing well’. They’d asked me nothing about how I was. When I asked what they meant, they said ‘Well, you have not self-harmed or tried to kill yourself in the past 48 hours’. To be honest, to me that seems a pretty low standard for ‘managing well’. My social care support company does have a 24-hour phone line and I have called them in the past and they have been really helpful. However, that is no longer available to me. Since my health relapsed this year, the manager of my care package has decided she does not want to have me on her books any more. Because I was discharged from hospital with no mental health care, social care has been withdrawn and I no longer have access to that advice line.”
Staying out of hospital isn’t the sum of the needs that someone might have while living with a more severe mental health difficulty.
“There’s always the same list of helplines at the bottom of an article,” Jane told me. “I don’t bother reading them anymore. It’s like when someone has a welfare rights problem and a stranger pops up with “Have you tried Citizens Advice?” A lot of this stuff is reassurance for mainstream folks that there really is help available if only we’d reach out and ask for help. They can be transformative for folks with mild-to-moderate conditions. But they are not an effective source of help for those of us with more serious problems. Like welfare rights advice, the deserts are getting bigger and joining together.”
Help, support and advice to live the best life possible with a mental health difficulty requires something more than a listening ear or an intervention to keep a person out of hospital. Mental health difficulty can bring all manner of challenges, especially in a society that is still finding its way toward accepting that mental health difficulties are disabilities. Hospital shouldn’t be the logical end-point for a crisis caused by the problems mental health difficulty brings. There is more to life with a longer-term, more severe mental health difficulty than treatment, even when treatment is an important part of what helps someone to have a better life.
Finding yourself at the end of your own resources and solutions to sort out problems in your life is terrifying, even more so when what is happening inside your head is terrifying, too. As Jane puts it: “There is definitely a moment when you’re feeling so desperate there’s conflict between the two different parts of your brain – the part that wants you to kill you and the part that does not. The part that’s constantly going through different scenarios and researching methods & planning – and the other part that wants to be able to speak to people who will listen. ‘This is what I’m doing, this is how I’m feeling – please help’. And to then get that help. There’s that moment, and then realising that there is nobody to call.”
Finding yourself at the end of your own resources and solutions to sort out problems in your life is terrifying, even more so when what is happening inside your head is terrifying, too.
The modern common message tells us that we should reach out to others when we are suffering because of our mental health; but the people I spoke to know what their problems are and have done just that, and found no one to grab their hand and hold them steady.
If you know exactly where you’d turn for advice, you’re lucky. Not everyone with mental health difficulties is granted that luxury. Changing your life – or even hanging onto it by your fingertips – takes more than a kind ear or even indifferent ear. It’s not wrong that people are looking for answers to questions and problems they can’t answer themselves. Sometimes simply signposting by rote isn’t enough. Without advice and support to put advice into action, we let people fall then ask them why they let go.
Names have been changed at request of interviewees to protect their anonymity.
These pieces are part of our writer in residence programme, and are the writer’s personal views.